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I also leave out for 30 mins, and always use stomach injection, find that it stings as it's going in, but not too much, and very little it or no pain after that. (I don't ice the area first)

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DougUte said:
Something amazing happened last night.I had my injection and it did not hurt!:ybiggrin::thumright: In fact I actually had to ask my wife if the shot was done! I did not feel a thing.:dance::dance::dance:
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DOUG! ME TOO! That's actually so weird! Last night I did mine and I was shocked and very impressed, the regular slight pain wasn't there, even though I had only cooled it a minute or two.
Maybe after so long it just stops being noticeable? It's almost my 2-year Humira anniversary.
 
Emily said:
DOUG! ME TOO! That's actually so weird! Last night I did mine and I was shocked and very impressed, the regular slight pain wasn't there, even though I had only cooled it a minute or two.
Maybe after so long it just stops being noticeable? It's almost my 2-year Humira anniversary.
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Happy Humiraversary! ..... ugghhh ..... that was a terrible play on words.

Regarding the pain, I leave my Humira out for a little over an hour, and it does wonders. Also, after using the disinfected wipes, use a bit of tissue to wipe it away the residue so when you inject, it doesn't go into the site and cause excruciating stinging .... happened to me and it was terrible.

Man, 15 months on Humira and 39 months on Imuran .... shit just got real.
 
IAmTheWalrus said:
Happy Humiraversary! ..... ugghhh ..... that was a terrible play on words.

Regarding the pain, I leave my Humira out for a little over an hour, and it does wonders. Also, after using the disinfected wipes, use a bit of tissue to wipe it away the residue so when you inject, it doesn't go into the site and cause excruciating stinging .... happened to me and it was terrible.

Man, 15 months on Humira and 39 months on Imuran .... shit just got real.
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Lol I love "Humiraversary"!! And I usually warm it up for much longer plus I use the syringe so I just rub it in my hands for a while to transfer some heat...I just sorta rushed through it this time. But warming it up is truly the trick to reduce the pain.

And wow, over a year with Humira and over three with Imuran. I love when maintenance meds do their job, that's great!
 
From what I understand from the pharmacy that ships my Humira, leaving it out for over 40 minutes deactivates the medication and is not recommended by the manufacturer. I leave mine out for 20. :)
 
IAmTheWalrus said:
Happy Humiraversary! ..... ugghhh ..... that was a terrible play on words.

Regarding the pain, I leave my Humira out for a little over an hour, and it does wonders. Also, after using the disinfected wipes, use a bit of tissue to wipe it away the residue so when you inject, it doesn't go into the site and cause excruciating stinging .... happened to me and it was terrible.

Man, 15 months on Humira and 39 months on Imuran .... shit just got real.
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You're supposed to wait for the area to dry after using the alcohol wipes :p
 
izzi'smom said:
From what I understand from the pharmacy that ships my Humira, leaving it out for over 40 minutes deactivates the medication and is not recommended by the manufacturer. I leave mine out for 20. :)
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I wouldn't think so, I've been leaving it out for an hour, sometimes I'll forget so it could be an hour and a half, been doing that for about 7-8 months now. I even rang my IBD nurse and pharmacist just to be sure and they said it would be no problem as long as it's room temperature.
 
Hi everyone, new member here (just got my loading dose - 4 shots WHAM!) with a few random questions that I hope old-timers may be able to help with.

1- What happens if you freeze the pens and how, if at all, can you tell if you have? I think I may have accidentally put my second dose in a refrigerator that was colder than recommended - though I do not know for sure if they froze or not as I moved them to a less cold area soon after I realized the temperature of the colder zone.

2- Is anyone on a dose that is higher than 40 mg (i.e. one pen/syringe) every 2 weeks? And/or at a frequency that is sooner than every 2 weeks?

I'm sure I'll have more questions as I continue to use the drug, but if anyone can provide their experience/insight on the above, it would be greatly welcome and appreciated.
 
scoutfinch said:
Hi everyone, new member here (just got my loading dose - 4 shots WHAM!) with a few random questions that I hope old-timers may be able to help with.

1- What happens if you freeze the pens and how, if at all, can you tell if you have? I think I may have accidentally put my second dose in a refrigerator that was colder than recommended - though I do not know for sure if they froze or not as I moved them to a less cold area soon after I realized the temperature of the colder zone.

2- Is anyone on a dose that is higher than 40 mg (i.e. one pen/syringe) every 2 weeks? And/or at a frequency that is sooner than every 2 weeks?

I'm sure I'll have more questions as I continue to use the drug, but if anyone can provide their experience/insight on the above, it would be greatly welcome and appreciated.
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If you freeze it, the active ingredient is deactivated. The pen has a little window, look through it and turn the pen upside down to see if liquid flows or not. If it's frozen DO NOT use it, even if it thaws. Call the pharmacy for a replacement! Wait since this already happened...were other liquids in that one refrigerator still liquid? If so, you should be fine. Do you remember if the temp was above freezing point? (32F or 0C)

I just started taking 40mg every weeks, though I had been doing it every 2 weeks for almost 2 years. I know some other people are doing the same! It seems to usually be people who respond well to the drug, but after a while of success start noticing symptoms again. That's how it is for me anyway.

Welcome to the club! :)
 
izzi'smom said:
From what I understand from the pharmacy that ships my Humira, leaving it out for over 40 minutes deactivates the medication and is not recommended by the manufacturer. I leave mine out for 20. :)
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Surely when you inject it under your skin, it must warm up to body temperature, 98 degrees almost immediately - why does this not deactivate it, I wonder?

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HUMIRA works by binding TNF and helps block the process of inflammation in the intestines that is caused by Crohn's disease. Because TNF blockers, including HUMIRA, affect the immune system, they can lower the ability to fight infections and may cause other serious side effects. HUMIRA needs to be stored in a refrigerator (2°C-8°C/36°F-46°F) in its original container and protected from light until it's used. HUMIRA should never be put in the freezer or frozen. Do not use HUMIRA if frozen, even if it has been thawed. Refrigerated HUMIRA remains stable until the expiration date printed on the prefilled syringe or Pen.
 
So ...... yesterday I woke up during the morning with pain in my bum, I shook it off and went back to bed, woke up around 8, feeling like I was coming down with the flu, just a horrible feeling, still have it fyi, rang my GP and told them what the deal was, pain in my backside, I have a couple of fistula's back there, feeling tired, weak, no appetite and now I'm on Flagyl, yuck, and Cipro because I'm 100% certain, and so is my doctor, that I'm showing early signs of an abscess .....

So that's four Christmas's in a row .... FOUR, that I've had abscesses. No wonder I hate this time of the year, I've mentally anchored Christmas with pain and anti-biotics. :lol2:

Hopefully these tabs clear it before it gets any worse and I can enjoy Xmas! Always early to mid December ... it can't be a coincidence. :shifty:
 
carlh425 said:
Hi Guys!

Hoping that this post finds you all with hope for a cure for our ailment!

I've been on Humira since 8/14/12.

So far the gut is doing pretty good, only 2-3 bad days during that time.

Some weird rashes on palms of hands. Like severe dermatitis.

I went to dermatologist 2x. He's still not sure if its the Humira that's causing it.

Weird little bumpy, itchy pustules underneath the skin.
They itch, dry underneath the skin, open up and then peel.

Hate it! Never had it!

Anyone chime in!

Thanks for your replies, I would really appreciate it!

Carl
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I have been on Humira for over a year now. About 4 months into treatment I started seeing the exact same thing that you describe. I had it on my feet, my wrists and my palms. Little pimple looking things, that dry out and peel away. Have been seeing a dermatologist for almost a year now because of it. She claimed it is a type of psoriasis and that it is caused from Humira. Since Humira is supposed to help with psoriasis it is very rare. Found that only approx. 4% of Humira users will start getting psopriasis. She gave me a bunch of creams and ointments. None worked......stopped taking them. The pimples are completely gone and now looks more like dry scaley skin. My hands and wrists seem to clear up and re-appear all on their own. My feet are till the same though. Hope this helps!!
 
I have officially been taken off the Humira and start Remicade on Tuesday. After being on Humira for 2years this is def going to be different. Keeping my fingers crossed. :)
 
I've taken Humira for 2+ years. Initially, the doctor prescribed it to address my Crohn's disease/fistula seen in CT scan and weight loss. After initial dose, I started to gain weight and the next CT scan did not show evidence of the fistula. Probably fall 2010/spring 2011 guts become noisy. (People here it and think I'm hungry) Realizing that it is not a good thing, I make an appt with new doctor (relocated). She suggests a colonoscopy of course. Get it done summer of 2012 and they could not get to far with the camera. The doctor recommends surgery. I am currently recovering a resection.

The new doctor feels that the Humira is not working. I think it did work because I initially began gaining weight. I don't know if the Humira can wearoff or stop working because I did start loosing weight again earlier this year. Maybe increase the dosage? She wants to start me on Imuran. And to top it off, United Healthcare won't cover the Humira after 2012.
 
Emily, thank you for the welcome. I actually don't recall if other items in the refrigerator were frozen at the time. The Humira seems to be working already though. I am experiencing much less pain than usual.

Geophysicist said:
Probably fall 2010/spring 2011 guts become noisy. (People here it and think I'm hungry) Realizing that it is not a good thing, I make an appt with new doctor (relocated).
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Geophysicist - did you experience any pain or other discomfort with the noisy gut? I just started Humira and my Crohn's symptoms (extreme pain, cramping, nausea) have subsided a great deal, but I do have an increase in gut noises - gurgling and draining (think glug-glug-glug) noises. My fear is that the Humira is just masking the pain - not that I'm complaining - but that the narrowing is still persisting.

Another question for the club - how do you get your Humira? Do you use a chain pharmacy (Walgreens, Rite Aid, CVS, etc) or something else (specialty pharmacy, mom and pop pharmacy, etc). Also, do you pick it up yourself from the pharmacy or do you have them deliver it to your home?
 
scoutfinch

At first it was just noisy. In the last year or so it would be accompanied with bloating. It felt like pressure would build up behind the area and then push it through. Understand this was already on a low particle diet as it was. I don't think that the Humira is masking the pain. I think that it does not treat every aspect of the disease, just like it does not work for everyone.

I get my Humira delivered through United Healthcare but if getting it cheaper from Walgreens in a prescription club works, I will be doing that!
 
scoutfinch said:
Another question for the club - how do you get your Humira? Do you use a chain pharmacy (Walgreens, Rite Aid, CVS, etc) or something else (specialty pharmacy, mom and pop pharmacy, etc). Also, do you pick it up yourself from the pharmacy or do you have them deliver it to your home?
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HI there - I pick mine up from my pharmacy - my local one where I am registered. I get 3 repeats per script and I get two at a time. I just asked for another script today. I am currently ok to get the drug until early Feb 2013 and then my specialist has to apply to the govt for another 12 months supply. We should be able to get it - fingers crossed :ycool:
 
@Aura
I'm double dosing (80mg every 2 weeks) as my doctor said there is some research (a doctor in Calgary did the study) that suggests Humira doses need to be adjusted depending on the patient. I started Humira July 2012 - did nothing until we started double dosing in November 2012. I haven't been this good in 2 years (2 bowl movements a day, somewhat predictable, very little blood). I fear the long term effects but for now, i'm just trying to enjoy it.

I also started the SCD diet in October - results so far are mixed but i'm sticking with it.

@Momof2EW
Good luck on the Remicade, as long as you keep trying stuff, looking for what works for you, that's progress.

37 - Crohn's, lower large intestine, Mezavant + Humira + SCD diet.
 
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This is to reply on dosage. Here in France they normally give 40 every two weeks but can give 40 every week as maximum dose. The higher dose has helped me generally, so it is unusual that I am having a day of sickness and gut pain and ..... well, you all know about it.

I don't think Humira is the ultimate answer for me but it may be the best there is for me and many others until more research comes to fruition. I heard about some guys working on the idea of zapping your immune system and mapping in a new one from the bone marrow of a sibling. Told my brother to stay alive!i
 
I'm supposed to jab tomorrow - but I just remembered that the script is still at the docs - I need to pick it up and take it to the pharmacy tomorrow after work 24th here tomorrow - I should have been better planned:eek:
 
scoutfinch said:
Another question for the club - how do you get your Humira? Do you use a chain pharmacy (Walgreens, Rite Aid, CVS, etc) or something else (spe cialty pharmacy, mom and pop pharmacy, etc). Also, do you pick it up yourself from the pharmacy or do you have them deliver it to your home?
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My insurance requires I get the Humira from a specialty pharmacy. They deliver it via UPS to my home.
 
I get my Humira the same as DougUte, delivered from Axium,(a speciality pharmacy) to my door. I've done my second loading dose and will start the bi-weekly routine on Friday the 28th. It started working right away for me. Good luck Momof2EW on the Remicade. It worked for 3 years on me. Everybody is so different.
 
okmontreal said:
@Aura
I'm double dosing (80mg every 2 weeks) as my doctor said there is some research (a doctor in Calgary did the study) that suggests Humira doses need to be adjusted depending on the patient. I started Humira July 2012 - did nothing until we started double dosing in November 2012. I haven't been this good in 2 years (2 bowl movements a day, somewhat predictable, very little blood). I fear the long term effects but for now, i'm just trying to enjoy it.
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That is really interesting. Yesterday the day before jab day - I had real bad crohns pains in the area where my ulcers were in the small bowel. I ended up taking two tramal to ease the pain.

I phoned my Pharmacist today and he went over to the docs to grab my script and fill it so I could pick up the humira on my way home after work, which I did.

Does anyone else get crohns pains in their flare site just before the next jab is due?
 
okmontreal said:
@Aura
I'm double dosing (80mg every 2 weeks) as my doctor said there is some research (a doctor in Calgary did the study) that suggests Humira doses need to be adjusted depending on the patient. I started Humira July 2012 - did nothing until we started double dosing in November 2012. I haven't been this good in 2 years (2 bowl movements a day, somewhat predictable, very little blood). I fear the long term effects but for now, i'm just trying to enjoy it.

37 - Crohn's, lower large intestine, Mezavant + Humira + SCD diet.
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Are you doing 40mg/week or 80mg all at once?

Hi Aura!! How long have you been on Humira? When last we talked, I think you were still on metho.
 
Hey Dexk - long time no chat - totally my bad

I have been on humira since May this year. I had a bad flare with 9 ulcers in my small bowel, had to quit work - but have been healing well on humira nearly gone in to remission - i think. I have got a job again and we have moved back to wellington. I am also on Aza as well.

Merry Christmas hun - great to see you again :biggrin:
 
How many of you out there find Humira somewhat beneficial but still have recourse to prednisone either as a low dose maintenance or as an occasional short treatment to cover flares (or for joint pains etc). Humira 40 per week helps me but I need th pred "silver bullets" from time to time to feel normal. Without pred I would have had Christmas in bed with my head under the pillow with a flare. Pred saved me from that but every time I use it I feel like I have mortgaged a bit of my future.
 
Paul Cronk said:
How many of you out there find Humira somewhat beneficial but still have recourse to prednisone either as a low dose maintenance or as an occasional short treatment to cover flares (or for joint pains etc). Humira 40 per week helps me but I need th pred "silver bullets" from time to time to feel normal. Without pred I would have had Christmas in bed with my head under the pillow with a flare. Pred saved me from that but every time I use it I feel like I have mortgaged a bit of my future.
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Yep I've had to use pred for a couple of months twice in the time I've been on Humira. The last time it probably saved me from having to give up Humira (was coming up to re-assessment); thankfully since then I've felt progressively better and keeping weight on for the first time in ages. It took me ages to get back into a decent sleeping routine though!
 
Paul Cronk said:
How many of you out there find Humira somewhat beneficial but still have recourse to prednisone either as a low dose maintenance or as an occasional short treatment to cover flares (or for joint pains etc). Humira 40 per week helps me but I need th pred "silver bullets" from time to time to feel normal. Without pred I would have had Christmas in bed with my head under the pillow with a flare. Pred saved me from that but every time I use it I feel like I have mortgaged a bit of my future.
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My son recently had a five week taper whilst on Humira. We are still awaiting blood results from last week to determine if it was enough. It did solve any outward problems he had prior though.
 
I am still on low dose pred with the humira - sometimes if I get bad then I may have a bigger dose of pred.

I went to watch the cricket yesterday in the rain and got sun burnt - first time I have been so sensitive with the Humira and Aza - I must remember to always put cream on before I go outside.

Today is an inside day for me :ybatty:

Hey Dexky - ssshhhh you are probably right - at the moment I am just hoping with all my hope that I can stay well for a bit. It was not good for me to be off work for so long - I get frustrated as my mind wants to do so much and my body is just not willing :thumbdown:
 
Hey everyone! New member here. Took my loading dose (4 shots, 3 in gut/1 in thigh--holy hell it burned) 16 days ago. Just took my second dose (80mg). After that, 40mg every two weeks.

How long does it typically take to notice some results? I've been on a taper dose of pred. for a few weeks. Now that I am off the 40mg of that a day, I've started to flare. Really hoping the Humira works.
 
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kilroy55 said:
Hey everyone! New member here. Took my loading dose (4 shots, 3 in gut/1 in thigh--holy hell it burned) 16 days ago. Just took my second dose (80mg). After that, 40mg every two weeks.

How long does it typically take to notice some results? I've been on a taper dose of pred. for a few weeks. Now that I am off the 40mg of that a day, I've started to flare. Really hoping the Humira works.
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They say humira takes 8 -12 weeks. But it can differ.
 
My Humira just took off right away. I did the 4&2 loading doses and was going to start the single shot tomorrow. Axium calls at 2 PM MST from the east coast, leaves a call us
message. My insurance company all of sudden wants me to get it from another pharmacy. Everything is closed now. I want my HUMIRA tomorrow like I was told.Good luck Kilroy, hope it all starts for you. Trying to hold a job with this " Hope I dont crap my britches disease", is sure a pain in the ass.
 
Mine took about three months to make a difference - but it has made a big difference which is great
 
kilroy55 said:
Hey everyone! New member here. Took my loading dose (4 shots, 3 in gut/1 in thigh--holy hell it burned) 16 days ago. Just took my second dose (80mg). After that, 40mg every two weeks.

How long does it typically take to notice some results? I've been on a taper dose of pred. for a few weeks. Now that I am off the 40mg of that a day, I've started to flare. Really hoping the Humira works.
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Hi there! Welcome to the forum!!

Why don't you pop over to the My Story section and tell us a bit about yourself? We would love to meet you!
 
Hi all,

So far I have had my loading doses of Humira on Oct 5th (4 pens) and October 18th (2 pens), plus another 5 pens (one per fortnight), and have one pen left. I understand that I will be assessed after the next pen to see if Medicare will continue to fund Humira for me.

For a while now (about 3 - 4 weeks) my symptoms overall have been reducing or becoming more manageable, and I have generally been feeling somewhat better.

The last couple of pens were taken at a time when I was already flaring and had moved on to a "mush" diet, eating only soft, easily digestible foods combined with the use of Modulen and as a supplement.

The gut pain I'm still sometimes getting seems to be a lot easier to deal with than the internal gut pain which previously often had me up in agony during the night. These pains feel more like a pain on the outside of the stomach (just under the skin, like I get after my pen injections), and they can usually be treated with a heat pack or just by holding my tummy carefully and masaging gently. Consequenty the number of Panadol Osteo tablets I am taking has dropped dramaticaly.

I'm looking for advice because I'm a little confused, I am not sure whether the improvements I am feeling are due to the Humira, or due to my new diet regime (or maybe both!). Any ideas?
 
Paul Cronk said:
This is to reply on dosage. Here in France they normally give 40 every two weeks but can give 40 every week as maximum dose. The higher dose has helped me generally, so it is unusual that I am having a day of sickness and gut pain and ..... well, you all know about it.

I don't think Humira is the ultimate answer for me but it may be the best there is for me and many others until more research comes to fruition. I heard about some guys working on the idea of zapping your immune system and mapping in a new one from the bone marrow of a sibling. Told my brother to stay alive!i
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Hi Paul Cronk, I've heard about that & remember the success rate was IIRC 98%. Sadly though the other 2% died.
Its certainly an extreme way of dealing with Crohns.
 
Hey everyone - i'm new to the site and group but have been diagnosed for 10 years - spent 8 with no treatment and suffered. have been on humira for 2 years with no symptoms after the first 4 jabs and in the last 6 weeks or so have noticed symptoms again. too scared to go back to specialist in case they say it's stopped working - but will make appointments after the new year like i know i should.
don't know anyone else in South Africa on humira but obviously there are others. i'm not on any other treatments- should i be? my specialist doesn't think vitamins etc are necessary really - other opinions. i'm generally well but soooo tired all the time. advise? loving being able to contact people who understand what my life is like.
 
MCD are you on the standard dose of 40mg every 2 weeks? If so, they may first try you on weekly injections. It has made the difference for some. Good luck!
 
mcd said:
Hey everyone - i'm new to the site and group but have been diagnosed for 10 years - spent 8 with no treatment and suffered. have been on humira for 2 years with no symptoms after the first 4 jabs and in the last 6 weeks or so have noticed symptoms again. too scared to go back to specialist in case they say it's stopped working - but will make appointments after the new year like i know i should.
don't know anyone else in South Africa on humira but obviously there are others. i'm not on any other treatments- should i be? my specialist doesn't think vitamins etc are necessary really - other opinions. i'm generally well but soooo tired all the time. advise? loving being able to contact people who understand what my life is like.
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MCD - I WOULD SAY vitamins are necessary as part of the issue is absorption in your digestive tract. I have taken Humira for 2+ years and started to notice weight loss. What I'm saying is that there is probably something else working. Maybe you are still having some inflammation and need to manage that as well. Talk to your specialist.
 
I was told the always tired symptom of humira was part of how the drug works. Is it supposed to get better? I will havectobget back to you guys on that.
 
I was told the always tired symptom of humira was part of how the drug works. Is it supposed to get better? I will have to get back to you guys on that.
 
Hey guys,
I've done my loading doses and just did me first shot at home.
The thing is I feel better for a few days after my shot, but the week between the two shots the cramps come back. Today my CRP was 147,8 before the Humira. I'm starting to get really worried, what do you guys think?
 
Foodlover said:
Hey guys,
I've done my loading doses and just did me first shot at home.
The thing is I feel better for a few days after my shot, but the week between the two shots the cramps come back. Today my CRP was 147,8 before the Humira. I'm startinIg to get really worried, what do you guys think?
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I I have been on Humira for 18 months. Over the first 12 months my CRP, which was 137 when I started Humira, dropped steadily.My last CRP was 2. My doc told me the goal was to get it under 20. It works, but it takes some time. I had drop off in the second week at first also, but as the med built up in my system I no longer have drop offs on the second week.
 
But my CRP never went down. It was 30 when I started, then 34 after the first loading dose and now it's reached 147!
 
Foodlover said:
But my CRP never went down. It was 30 when I started, then 34 after the first loading dose and now it's reached 147!
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Hi, sounds like it will be best to get it checked out with your specialist - just in case there is inflammation elsewhere, just a possibility.
 
DougUte said:
I I have been on Humira for 18 months. Over the first 12 months my CRP, which was 137 when I started Humira, dropped steadily.My last CRP was 2. My doc told me the goal was to get it under 20. It works, but it takes some time. I had drop off in the second week at first also, but as the med built up in my system I no longer have drop offs on the second week.
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So you believe that after six months with some relief but not enough the drug may still need time to show the full effect? Patience is hard but I can do it if the is reasonable hope.
 
Foodlover said:
But my CRP never went down. It was 30 when I started, then 34 after the first loading dose and now it's reached 147!
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I didn't realize that. I agree with Kirsty. You might have something else going on, or maybe Humira isn't working for you.Get it checked out.
 
Paul Cronk said:
So you believe that after six months with some relief but not enough the drug may still need time to show the full effect? Patience is hard but I can do it if the is reasonable hope.
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Paul, If you have improved while on Humira, but not as much as expected I would still give it some time.You may also look at a combination with something else.I also am on Budesonide. You might want to talk to your doc about it.
 
Thanks. I would have tried Budenisode which is supposed to be safer than Prednisone. Trouble is I need Prednisone periodically to relieve arthritic pain and I save that for all over bad times. Therefore another drug is probably too much. I also thought about low dose Prednisone with the Humira but the degree of immunosuppression worries me. As always you have to make the least bad choice!
 
Paul Cronk said:
Thanks. I would have tried Budenisode which is supposed to be safer than Prednisone. Trouble is I need Prednisone periodically to relieve arthritic pain and I save that for all over bad times. Therefore another drug is probably too much. I also thought about low dose Prednisone with the Humira but the degree of immunosuppression worries me. As always you have to make the least bad choice!
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I understand that. Good Luck.
 
You discover some interesting things. Started taking a drug for joint pain called Ixprim, which contains Paracetamol and Tramadol (normally I just take Paracetamol but sometimes when it is real bad...). Anyway after two days my Crohn's symptoms have gone on vacation and it is either coincidence or the Tramadol, which is a mild opiate.

Since I recently came off any other "mother's little helpers" I am not worried about the side effects or dependency on this drug so I am pretty comfortable with it if it continues to help.

Anybody else discovered Humira/Tramdol in combo?
 
Hello everyone,

I wanted to ask a quick question....I was on infliximab for 7 years and it was amazing until I built up antibodies to it. Now on Humira which seems to be working well but I am so so worried that I will eventually build up antibodies to it also. As I have exhausted most other medical options it would be likely that if the Humira fails surgery would be my only option. I was wondering if anyone else who has been on infliximab and built up antibodies have found that they have been able to stay on Humira for a longtime without the same thing happening? Many thanks
 
Paul Cronk said:
You discover some interesting things. Started taking a drug for joint pain called Ixprim, which contains Paracetamol and Tramadol (normally I just take Paracetamol but sometimes when it is real bad...). Anyway after two days my Crohn's symptoms have gone on vacation and it is either coincidence or the Tramadol, which is a mild opiate.

Since I recently came off any other "mother's little helpers" I am not worried about the side effects or dependency on this drug so I am pretty comfortable with it if it continues to help.

Anybody else discovered Humira/Tramdol in combo?
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Hi Paul,

I have found that codeine (also an opiate) helps my crohns symptoms as not only does it relieve my pain but it slows down my digestive transit so I go to the loo less. Im prescribed high strength codeine which i take regularly for diarrhea control. Took tramadol after surgery a year ago and it's much the same as codeine, just stronger
 
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Toomuchtooyoung said:
Hello everyone,

I wanted to ask a quick question....I was on infliximab for 7 years and it was amazing until I built up antibodies to it. Now on Humira which seems to be working well but I am so so worried that I will eventually build up antibodies to it also. As I have exhausted most other medical options it would be likely that if the Humira fails surgery would be my only option. I was wondering if anyone else who has been on infliximab and built up antibodies have found that they have been able to stay on Humira for a longtime without the same thing happening? Many thanks
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That's the main reason why I was put on mtx with humira. Methotrexate helps with that as well as increases the effect of humira. Might want to run it by your doctors, as it might not be right for you. I had a lot done even then I saw some very reputable doctors here in the states. Just be warned mtx in itself is serious, add humira and you get rocket fuel instead of normal gas. It's knocked me out a couple of times at first.

Here is another explanation from NIH: Patients who have had reactions to Infliximab may not have a reaction to Humira, given the latter anti-TNF agent is fully humanized. The reaction is thought to be due to antibody response to the the anti-biologic agent being used. In this case the addition of methotrexate is being used more so for the curtailing of the antibody response in conjunction with its anti-inflammatory effects.


So what they say is your body's natural defense against humira is broken down with the immune system (tnf). Thus making humira more effective and powerful...hope this helps.
 
Thanks Scaryman,

I'm also on methotrexate subcutaneously but it is making my hair fall out so going to ask to be switched to oral methotrexate (never had the problem with hair loss when I was on methotrexate tablets before). It is good to know that the methotrexate could stop me getting antibodies to the Humira, my gastro had mentioned that the Metho increased the effects of the Humira but not the part about the Metho reducing an antibody response. Thanks :)
 
Toomuchtooyoung said:
Thanks Scaryman,

I'm also on methotrexate subcutaneously but it is making my hair fall out so going to ask to be switched to oral methotrexate (never had the problem with hair loss when I was on methotrexate tablets before). It is good to know that the methotrexate could stop me getting antibodies to the Humira, my gastro had mentioned that the Metho increased the effects of the Humira but not the part about the Metho reducing an antibody response. Thanks :)
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No problem, that information came from some of the immunologist geeks here in the United States National Health Institute. They know humira very well.:thumright:
 
Hey Fellow Crohnies, Hope everyone is doing well. Im in need of a bit of advice,my Consultant has decided to start me on HUMIRA and also recommends i carry on taking mercaptopurine (75mg) and prednisolone (30mg). does anyone know if its safe to take mercaptopurine with HUMIRA as on the humira website its advices caution?
 
I. Know all these drugs give us a better quality of life, and we mix and match them like the clothes we wear , but at times I do feel like a guinea pig. I am on humira and aza, but may move from aza to methotrexate.
 
Gazza said:
Hey Fellow Crohnies, Hope everyone is doing well. Im in need of a bit of advice,my Consultant has decided to start me on HUMIRA and also recommends i carry on taking mercaptopurine (75mg) and prednisolone (30mg). does anyone know if its safe to take mercaptopurine with HUMIRA as on the humira website its advices caution?
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Never heard of humira with Mercaptopurine. But that won't mean anything, why not methotrexate?
 
Gazza said:
Hey Fellow Crohnies, Hope everyone is doing well. Im in need of a bit of advice,my Consultant has decided to start me on HUMIRA and also recommends i carry on taking mercaptopurine (75mg) and prednisolone (30mg). does anyone know if its safe to take mercaptopurine with HUMIRA as on the humira website its advices caution?
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I was on both Humira and 6 mercaptopurine together at one time. It worked great until my white count drop to low and they took me off the 6 MP at that point. It worked better then methotrexate for me. Both these drugs are used to help you not build anti-bodies is what I was told.
 
Gazza said:
Hey Fellow Crohnies, Hope everyone is doing well. Im in need of a bit of advice,my Consultant has decided to start me on HUMIRA and also recommends i carry on taking mercaptopurine (75mg) and prednisolone (30mg). does anyone know if its safe to take mercaptopurine with HUMIRA as on the humira website its advices caution?
Click to expand...

My GI says its not good to take humira with prednisolone, told me to taper off the pred (which took me ages!)
Don't know anything about mercaptopurine, sorry.

Gra

2
 
A friend of mine is on Remicade and 6no. What you need to be aware of its having your immune system lowered to much.He just suffered a bout of the Shingles.The entire right site of his face swelled up.It was triggered by his lack of immune system.
 
Hi there I'm currently on Azathiprine 125mg and have been for the past 6 years, have had a coup,e of flare up in the last couple of months, which I put down to having a miscarriage and stress and upset. My doctor has mentioned the possibility of starting me on Humira but I am very unsure. I have not finished having my family yet so don't want to take anything that I can't take during pregnancy ( I have a very healthy, happy 2 year old and I took Azathioprine the whole pregnancy with no problems at all). I will discuss all this with dr when I see him, wass just wondering if anyone on here had any experiences with Humira and pregnancy? Did any one get pregnant and have to stop taking it? Etc. this is the first couple of flare ups in 6 years so I would much rather stick with the Aza and see how it goes
 
Paul Cronk said:
Thanks. I would have tried Budenisode which is supposed to be safer than Prednisone. Trouble is I need Prednisone periodically to relieve arthritic pain and I save that for all over bad times. Therefore another drug is probably too much. I also thought about low dose Prednisone with the Humira but the degree of immunosuppression worries me. As always you have to make the least bad choice!
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I have terrible arthritis that comes with Crohn's-enteropathic arthritis. Humira didn't work for me but Remicade takes care of both the bowel and the joint issues for me. Entocort can be used short term and is nowhere near as bad for you as straight prednisone. I understand the extra level of suppression in the immune system is worrisome but it doesn't have to be long term.

I really like bromelain, which is a natural substance from pinapple to relieve arthritis flares too-if they are relatively minor. Hope this helps! :D
 
Hi im Alison i was diagnosed with crohns disease of the ielum and colon in 1999. I had a rough few years on every tablet going but eventually went away on its own until 2010. I was on no tablets whatsoever. In 2010 i was diagnosed with iritis. I was told by my eye doctor that it was linked to the crohns disease. My crohns didnt bother me until 201:ylol2:2 when i had a bad flare up in which i am still on budesonide now. My GI told me to have gastosomy, colonoscopy and mri scan . The tests shown superficial ulceration of the ielum. I was put on 6mp as azathioprine i am allergic to. I am also allergic to 6mp. In the next couple of weeks I have got to go onto humira. I am just waiting for my liver function to go back to normal then i can start treatment. I just wondered about other peoples views on humira as i have heard a lot of bad stuff.

Thanks

Alison
 
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alisonwilkinson said:
Hi im Alison i was diagnosed with crohns disease of the ielum and colon in 1999. I had a rough few years on every tablet going but eventually went away on its own until 2010. I was on no tablets whatsoever. In 2010 i was diagnosed with iritis. I was told by my eye doctor that it was linked to the crohns disease. My crohns didnt bother me until 201:ylol2:2 when i had a bad flare up in which i am still on budesonide now. My GI told me to have gastosomy, colonoscopy and mri scan . The tests shown superficial ulceration of the ielum. I was put on 6mp as azathioprine i am allergic to. I am also allergic to 6mp. In the next couple of weeks I have got to go onto humira. I am just waiting for my liver function to go back to normal then i can start treatment. I just wondered about other peoples views on humira as i have heard a lot of bad stuff.

Thanks

Alison
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My biggest issue with humira in extreme tiredness after injections. I'm not sure if it is going to keep flares at bay yet as I'm having issues tapering from 40mg of prednesone. Sorry that doesn't help.
 
Eilidh said:
Hi there I'm currently on Azathiprine 125mg and have been for the past 6 years, have had a coup,e of flare up in the last couple of months, which I put down to having a miscarriage and stress and upset. My doctor has mentioned the possibility of starting me on Humira but I am very unsure. I have not finished having my family yet so don't want to take anything that I can't take during pregnancy ( I have a very healthy, happy 2 year old and I took Azathioprine the whole pregnancy with no problems at all). I will discuss all this with dr when I see him, wass just wondering if anyone on here had any experiences with Humira and pregnancy? Did any one get pregnant and have to stop taking it? Etc. this is the first couple of flare ups in 6 years so I would much rather stick with the Aza and see how it goes
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Hi there! I took humira while pregnant, it is safe. It's a pregnancy cat. B drug. I had and still have a very healthy baby girl!
 
alisonwilkinson said:
Hi im Alison i was diagnosed with crohns disease of the ielum and colon in 1999. I had a rough few years on every tablet going but eventually went away on its own until 2010. I was on no tablets whatsoever. In 2010 i was diagnosed with iritis. I was told by my eye doctor that it was linked to the crohns disease. My crohns didnt bother me until 201:ylol2:2 when i had a bad flare up in which i am still on budesonide now. My GI told me to have gastosomy, colonoscopy and mri scan . The tests shown superficial ulceration of the ielum. I was put on 6mp as azathioprine i am allergic to. I am also allergic to 6mp. In the next couple of weeks I have got to go onto humira. I am just waiting for my liver function to go back to normal then i can start treatment. I just wondered about other peoples views on humira as i have heard a lot of bad stuff.

Thanks

Alison
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Hi Alison,

Humira has been brilliant for me. I had to switch to it from infliximab and I have have only noticed one side effect- when I take it a couple of days after my methotrexate the two drugs combined give me a bit of a brain fog, otherwise I have only good things to say about Humira. It has helped me get on top of my aggressive crohns :)
 
Hi thanks for all the replies. I feel a bit more happy about humira now. Hopefully humira will work for me. Ive been told if humira dont work and the ielum becomes more damaged then an operation might be needed. I am really lucky that ive never had a operation since being diagnosed in 1999.

Alison
 
I noticed the fatigue after taking the humira so I just do it at bedtime

What I wonder is how long people stay on it when it seems to be
Working great some days and not so great others?
 
alisonwilkinson said:
Hi im Alison........ I just wondered about other peoples views on humira as i have heard a lot of bad stuff.
Thanks
Alison
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Allison,I was very resistant to going onto humira, but after reading lots of other peoples stories I decided that it seems to help many people, and not too many have problems with it. I have been taking it (via pen, every 2 weeks) for 12 weeks now, it only just started to work for me in last two weeks, and is making a big difference. Like, I've not had too take any pain meds for 10 days straight, I am regularly having"normal" poops, and not many loose ones. Most nights I an sleeping right through the night, previously was up with gut pain nearly every night. Certainly still not perfect, but things seem to be going in the right direction for a change.

Also I have found the injection is not as painful as some people claim, I always inject into tummy area, it stings like a bee but the pain only lasts about a minute. Plus I get some low level pain in the injection area for a day or two.

2
 
Jab day on Monday. I am still trying to adapt to all my meds incl humira nd working full time. When I get home all I do is sleep. How do others cope with this nd work?
 
I usually do my jab on a Thursday, but my GI tells me that it doesn't hurt to do it one, two or three days early or late, if circumstances require it. You could move your injection back to Sunday, then Saturday, then Friday. But clear it with your GI first.

2
 
Oh, my. I am new to humira, waiting for my initial dose to come in the mail. From the last few posts I'm getting the idea that I will be worthless, needing to sleep all day the day after I inject!? Is this correct, or is it just in the beginning doses!?

I like the term "jab day" :)
 
Michelle89 said:
Oh, my. I am new to humira, waiting for my initial dose to come in the mail. From the last few posts I'm getting the idea that I wi.ll be worthless, needing to sleep all day the day after I inject!? Is this correct, or is it just in the beginning doses!?

I like the term "jab day" :)
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Michelle, most people do not get tired from it.Just a lucky few. I don't get tired every time. Even when I do I can usually function.
 
DougUte said:
Michelle, most people do not get tired from it.Just a lucky few. I don't get tired every time. Even when I do I can usually function.
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I hope I can avoid this, I have a hard enough time with everything going on keeping up with my extremely busy 5yo! Some days are so difficult as it is, I'm hoping humira can make it better!
 
Brandonz said:
What I wonder is how long people stay on it when it seems to be
Working great some days and not so great others?
Click to expand...

I would imagine that SOME improvement is much better than NONE. I guess it depends on what your alternatives are. Certainly for me, since the humira started to work three or four weeks ago, I am not perfect, but it's infinitely better than going back on prednisone or Imuran.

And of course, I am assuming (and hoping) that I will continue to improve from here forward.

2
 
Thanks for yr good advice. You r great people. The humira has made a great difference to my quality of life nd the tiredness is an ok trade of for me
 
Michelle89 said:
Oh, my. I am new to humira, waiting for my initial dose to come in the mail. From the last few posts I'm getting the idea that I will be worthless, needing to sleep all day the day after I inject!? Is this correct, or is it just in the beginning doses!?
:)
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Michelle, personally I find that I need to rest / sleep once or twice a day (as well as overnight) for about 30 - 60 minutes. Also, I was needing the rests before I started humira, haven't noticed that the tiredness is any worse than before.

2
 
Looks like just in case I'll try to plan out my "jab day" (I like referring to it as that, lol) accordingly in case I need rest. Glad I read this!

However, I may be premature in thinking I'm taking Humira. I received a message from Medco pharmacy this morning that stated my insurance has approved my initial order for humira but that it was only approved from January 2013 to February 2013...... and stated that my insurance approval may change. What the heck does that mean!? This isn't a one month on then decide to do something else sorta decision here..... confused....

I just want to get on something to help. I'm currently taking prednisone (tapered to 30mg this week from previous 40mg) and imuran, which obviously isn't really working anymore.
 
I find it very difficult to tell if the Humira is working or not. Started on 40mg every two weeks from July 2012. Seemed to make a difference at first (off Pred) but by November I needed to be upped to 40mg every week. Since then I have needed Pred several times and am now at a stage I need 20mg Pred per day to have an acceptable quality of life. But 20mg Pred without Humira should do that anyway!

I need to overcome the fear that by admitting Humira may not be working, I am running low on alternatives, and may not be prescribed it again. Maybe it will start to work better eventually, but it doesn't feel like it.

Have been told that it can happen that Remicade will work for some where Humira does not. I fear my Gastro man will simply say these things are equivalent.

Ah, what fun decisions we all have to make to get the best out of a bad deal. I guess that if I stand back objectively and say why would you continue to take an immunosupressant which isn't working, then my answer comes more clear.
 
Paul,I have read that some people need a second drug to give humira a boost after they have been taking it for a while (from memory I think methotrexate is one such drug) in order to continue getting the benefits. Might be with looking into.

2
 

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